Humira Review

Tuesday was my medication review with my GI at Good Hope.
I’ve been asking about my review for a good 3 months to date, and finally, I’ve been given an answer.
After all the hoop jumping, all the tests and bloods and scans, finally, FINALLY, I’m off the Humira.

I had a speech all planned and all the evidence I’ve accumulated in the last couple weeks, only for my doctor to suggest, after having looked and explained my blood results and historiography of my colonoscopy, we stop my medication. I hadn’t expected this. A little grin appeared on my face and I nodded. My bloods showed a low CRP level (three, first time it’s been in the boundaries – 1 to 10 – for a couple weeks) no anaemia and no real cause for concern. My polyps came back without issues and generally, I’ve been going good for 6 months now; the Humira wasn’t really needed.
But.
What was needed is a new drug. It had been mentioned before; they had at one point suggested it alongside Humira injections, but now, I shall just take this. It’s a 6mp – Purenthol or Mercatopurine; a sister drug to Azathioprine. Its means going back to weekly blood tests and understanding the risks like when I was on Aza.

For me, Aza didn’t work. It was October 2010 and I was sick. I was in a flare and the Pentasa wasn’t doing anything. I’d just been told to start taking Aza before the dose got double and I fell very sick. I was rushed into A&E with all sorts of pain and mostly my consultant blamed the Aza. I got C Diff again and developed Shingles. I was sick as a dog. Little did I know, or have been only told recently, the Aza wasn’t the problem, it was the lingering C Diff of the previous month. It hadn’t gone away with all the antibiotics they had given me. Oh, right! Nice to know! So, this time around, I shall be looked after. Hm.

I get the feeling that my remission or whatever maintenance of these Crohn’s symptoms I have, mean I will be alone in this one. I am nothing like I was before; I am not sick like I was, I’m not as naive and simple as I was, and I sure as hell aren’t as inexperienced as I was. As time had gone on and it’s passed at an alarming rate, I find myself fighting for a different cause. I used to fight for the chance to be normal once more. I had to give up that ghost, that dream, many months ago. I fight now for some normality. Sounds similar, but it feels completely different to me. I only wanted to be back to normal, knowing that deep down inside, I could never return, that door was closed, and I had to face who I was and what I was without looking back. That is hard to do. Now, I am finding that I want to minimise the damage all these medications can / have / will do my body.

This sounds very broad, but I’ll go specific: I want to maintain a good and healthy body as much as my Crohn’s will let me. I am currently 24 and experiencing awful joint pain. It could be Arthritis in its early stages. It could just be muscle weakness and I could be experiencing heightened levels of acute pain because my pain has already been masked for some time by other medication. I’ve been three weeks, now to be four weeks, without a new Humira injection running around my body, helping the hurt I feel. I am left exposed. Yes, I’ve asked for this, to remove the Humira from my body to a lower dose of a different level of medication. I accept that. I don’t enjoy the raw feeling I feel.

What I mean, in reality, is that, how is this 6mp going to change me?
Will it make me better? I hope so, and I bet the health care professional who know my case, hope so too, when prescribing this. My GI sounded confident on Tuesday that this will be best for me NOW. But is he really that confident? Does he hope, like I do, that this change in medications doesn’t result in an admission? A flare up? A problem?

I sat here only weeks ago bitching and moaning about Humira and pain. Now I sit here and explain the longing I feel inside about the strength of this medication. Something I can’ quite admit to anyone else in my actual life. Only here. I hope that it does work. That I’ve gotten far enough into ‘recovery’ that Purenthol does its job without too much hassle.
Oh, and that my joints don’t actually have Arthritis in them. That would highly amusing in a sad and angry way.

Unhappy isn’t even half of it.. I’m full of anger, too.

Yesterday, my Humira injection was due. Yesterday, I visited my GP to discuss my ongoing symptoms. Yesterday, I was told I was had gained so much weight that I was unable to take contraceptive pills. Yesterday, I cried and inwardly cursed the drug that had brought me back from the brink. Yesterday was tough. I finished work in the middle of the afternoon, carried myself up the road to the doctors. I sat with my new GP – a lovely Welsh lady – who wanted to know why I was back, not even a week after my last appointment. Basically, […]

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The needle stick

For those who are new to this blog or need some reminding, I currently take Humira as my only method in my Crohn’s treatment plan. I’ve been on it since December 2011 and for the most part, it’s worked well. However, for whatever reason or a mixture of reasons, lately, its been causing more problems than it solves. That aside, I know more Remicade Crohn’s patients than I do, Humira ones. In fact, in that spectrum, alot of the people I’ve come into contact with Crohns, take tablet treatment also, or instead. Despite being a “treatment for moderate to servre […]

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Result!

…and moving forward, slowly. I last wrote on the afternoon of my bowel prep, on Thursday. I got through the first hour of Moviprep without too much of a problem, it didn’t taste as bad as I thought it might do – my experiences of Klean Prep for my MRI didn’t really set me yup well for this – but after a hour, I was done with my first litre. I got some juice and got settled down for the runs to the bathroom. After about a half hour, I finally went – some 90 minutes after starting prep, but […]

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Le sigh.

Sadly, I’ve been going through a rough time this past week or so. I’ve been experiencing terrible abdominal pain and some awful bathroom visits. All the while, going to work, doing my Brownies leadership and persurviering with my snowboarding. You’ll be glad, I managed it all whilst being unwell. But here I am sat, attempting to complete NHBPM – albeit a week behind – and I’m finding it hard to concertrate. I spent last night yelling and screaming and crying at my boyfriend as we faught. Why? Because I am in constant low levelling pain and uncomfortable as fuck. No […]

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I’m taking this afternoon to talk you about medication. This was the morning regiment of my tablets whilst in hospital last September. There are (from l-r) two calcium (Adcal), 40 mg of Prednisolone and three coated Pentasa. That was pretty standard for new Crohn’s diagnosis. The Pentasa would be repeated again during the day. It would take me a while to get used to all these new medications, of just taking them to begin with, then with what they would do, or in my case, fail to do. The second photo is my regiment last November, once I was finally out of hospital for the last […]

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There has to be 9 empty injections in this medical waste box. That is the last four months of Humira medication. They sit in my fridge, reminding me of the magnitude of my situation. It is flowing through my body, in my blood, controlling my symptoms for as long as possible until the next dose is due. I really do thank my lucky stars for how brilliant this works for me.

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Humira Thursday…

Last night was my mom’s first chance to do an unsupervised Humira injection. We did a test run on Wednesday with the dummy pen and I was more than a little controlling. I wanted it to be done right, to maybe do it myself, but I have to let her do it for the time being. I was a little nervous; understandbke right? What if the injection from two weeks ago – the one that was so effortless and pain free – was a fluke? Nothing but beginners luck? I certainly felt that way when I first started ny my […]

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Bloody Typical

Heard of the phrase “a moment on the lips, forever on the hips”? I choose to add; “pushing through the guts” too and it is bloody true for me right now. I had pizza for dinner last night. It was delicious, dont get me wrong and nothing out of the ordinary. But it most definitely did not feel that way at 5.30 in the morning. That gut wrenching pain that spreads through my left lower quadrant doubling me up in pain. That bring me to begin cursing my stupid hunger the night before and whatever possessed me to eat so […]

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This was today, again. Me and mom went along to the Endoscopy suite at Good Hope for my Humira appointment with my IBD nurse this afternoon. She got trained by my nurse, Ruth, and had to give me my shot. And you know what? No pain. After a try out with the dummy pen, she was encouraged to do my real one. I got abit panicked and starting freaking out a little, but next thing you know, the plunger goes down, the drug is administered and it’s all over in 10 short seconds. It was nothing. I’d thought it was […]

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The BIG H – revisited, slightly

So yesterday was Humira Thursday. I had an appointment with my IBD nurse to get me fixed up with this injection, phew! It was pretty uneventful. I had tears – as usual now with the Big H, the bastard – and she did my injection for me. Pushed down on the ‘trigger’ and gave me my Crohn’s medication. Thank goodness! I felt alot better afterwards. Feels weird to say it, but it does really help. I need to remember that feeling for the next 12 days until my next one. I’m not sure if what I am going through is […]

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GI Clinic – 15.05.12

I spend the afternoon at Good Hope in the Gastro clinic. Outcomes: – Iron Infusion in the coming weeks. – Humira injection next Thursday can be done with my IBD nurse in the endoscopy suite at the hospital. – Colonoscopy is due in 2 months time. Thoughts: It is a weight of my mind to sort my Humira out. I was very upset about my stupid stupid self for not being able to inject myself as effectively like I once could. This is the next option for me; getting someone to give it to me. First the nurse at the […]

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The One with Alot of Swearing

I am at an en passe. I hate that needle with a passion. Yesterday, I spent the afternoon giving blood at the hospital for my upcoming clinic appointment with my GI. That was simple. Not even the sharp scratch I usual feel, nothing. Took two vials of my blood and sent on my way. Today, Humira time! I’ve done that injection at home for the past 4 months, twice a month. That’s, what, 8 injections? Plus, the half dozen I did at the hospital before hand. I am used to it. But, as you might be aware, it hasn’t been […]

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You think you know, but you have no idea.

I am scared. Alot of the time. I was sat on my bed earlier on, lying next to my boyfriend, trying to find a moment to just relax and be in the moment. It is so hard to just be in the moment. And this isn’t to do him a disservice, but it is so terribly difficult of late to relax and just be happy. Sure, I smile, I laugh, I even giggle, but I worry. A tremendous amount. Here is a snippet from the monologue inside my head: “Right. Work. Work. What if I need the bathroom at work? […]

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From bad to worse?

I am going to go out on a limb here and say the following: I am pretty sure that this is not just a cold anymore. It has been 5 weeks and it not going anywhere. I also pretty certain that it has gotten worse in the last couple days. It started last last month with just the sniffles. I took my Humira as normal and thought nothing of it. Mid to late April, it developed a cough with it too. Began to worry about that being mixed in with my Humira. It cleared for a day or two, took […]

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Another.. second Thursday?!

It feels like forever since my last injection of Humira, but it was only two weeks ago. Alot has happened in two weeks… So, I almost forgot the date and day and that it was indeed time for some more lovely Anti TNF medication. If you’ve been following me through the Humira experience, you’ll know that the last couple of cycles have been abit rough to say the least. I’ve been panicking about my injections, worrying about not lasting on them, pushing myself too far too fast. Today, for the first time, in many many months, I feel good about […]

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Humira Thuuuuursssdddaaaaayyyy! :D

I sound full of excitement and hope, from that title, don’t I? Well, it was difficult today. My insanity prevailed more than my logic. My logic dictates that it is a 10 second injection for 14 days of greatness. What does my insanity think? Needle. Needle! NEEDLE! Painful painful prick of a needle! I sat with the pen posed on my skin for what felt like an eternity. I took it off. Gave myself a pep talk – Seriously? You can’t it it NOW? What is wrong with you? You’ll flare up without it. You’ll have horribly painful days if […]

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Two Minds..

Today is the final day of my Humira cycle. And it is a good day. Its sunny! I feel rather much alright. I feel like fighting today. But. There is a niggly feeling in the back of my mind. That same voice that wants me to say ‘fuck it, just do it’ wants me to just give up. It wants it to be Thursday morning today. WHY?! I feel okay! I’m not desperate for my medication like before! I can totally do my shift at work today without problem! Why does she decide now is sensible time to pipe up […]

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Expectations

I know that is it unrealistic to have expectations when it comes to my Crohns, but I can’t help it sometimes. When things were bad, I just wanted to be better. I wanted my new medication to work and I wanted to get back to my normal life. And in a way, I am back, and I am as normal as I’ll ever be again. But starting Humira back in December was a scary affair. I was very aware that I could not spend the rest of my days on steroids –  and I really didn’t want to have to […]

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Humira #101

Now, I am not a completely stupid girl, I know that the medication I am on helps me; helps relieve the crohns symptoms, and let’s me go out in to the world and kick ass every day. I know from personal experience that everything else has failed – in one way or another – and this is my option at the moment. And what is a couple hundred £££ worth of injection if not brilliant for giving me back my life? So what, I have to actually stick a needle in my thigh bi- weekly? So what, if it takes two […]

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